An open letter to GPs and paediatricians
Nearly seven years ago, at the age of three, my son was diagnosed with Autistic Spectrum Disorder and ADHD. He was diagnosed by a consultant paediatrician from a leading children's hospital.
Our family life had been incredibly difficult for the 18 months leading up to the diagnosis because of my son's condition and I was hopeful that the specialist doctor would have some solutions for our many problems.
Unfortunately he only had four pieces of advice: make contact with the autistic association, get speech therapy, get some emotional support for ourselves, and in time, possibly look at medication for our son. None of the first three helped my son become more flexible or less anxious, communicate better, get rid of 'stimming' behaviours or stop throwing tantrums.
I have seen a number of doctors – GPs and paediatricians – over the last seven years. Let me be completely honest and say that the vast majority of them have not known how to help my child, nor have they known where to send me to find help. The only two useful things doctors have done have been to draw up a mental health plan for me and one for my son, and to prescribe risperadone (on my request) at the age of 6 when he really couldn't cope with life and was constantly blowing up.
On my own, I discovered our behavioral therapy (the Relationship Development Intervention program), took my son to see a homeopath and naturopath and put him on a gluten free casein free diet, all because of my personal research. He made considerable progress with these interventions and I found that whenever we would go to see a GP or paediatrician they would say, "Well, it sounds like you've got things going pretty well, so I'll see you next year."
I was never happy with him being on risperadone, however, even though I liked the calming result it brought, and I knew that we would need even more help once life was free of the chaos and panic that it had been at the beginning when he was still very unmanageable. It was at that point that I discovered our current GP, who has a particular interest and practice built around autism and other types of neurological and learning disorders.
In the two years that we have been seeing her, my son has made huge progress academically and socially. With a calmer brain he has been able to learn more from his behavioral program, and in the last few months he has been able to be weaned off the risperadone with no untoward effects. Here finally has been a doctor who has said, "We need to do this, we need to do that and we need to fix this." She has taken blood tests and x rays and done auditory processing tests. His diet has been tweaked and a regime of supplementation has started.
And we have seen actual results. In fact, the principal at my son's school has been so impressed with his progress that he said at his progress meeting in 2012, "I wish I could tell other schools, 'Look, this is how it's done!'."
I am often asked, "Who is your doctor?" There are multitudes of families out there with children on the spectrum who need the sort of help our family has been getting. And tragically, my world was rocked this week when I discovered that our doctor will be retiring next year.
My request to you, GPs and paediatricians of all kinds, is: please consider training and learning more about ASD, ADHD and learning difficulties and finding actual ways to make real differences to these children. Please investigate the MINDD foundation (www.mindd.com) and attend its conferences. Please ring up my doctor and talk to her about what she does. I'd be happy to give you her phone number. Please don't dismiss dietary interventions for learning disorders. Please consider doing things that might be outside the norm.
My doctor is retiring and I'm going to need someone else who has solutions for our problems. And I'm going to need to refer on the many other concerned and desperate parents who are also looking for answers for their children.